I'm sure the vast majority of people here have never heard the name Mary Beth Fecteau, but she committed her life to fighting the diseases (Crohn's and colitis) many of us deal with every day. Sadly, Mary Beth passed away from complications with Crohn's last Friday at the age of just 47.
She had worked with the Crohn's and Colitis Foundation of America (CCFA) to raise money, inspire others and give hope to so many. I met her in 2010 when my (now ex) wife signed up and ran a half marathon in support of me and my battle with Crohn's. I remember sitting at the dinner with her at a CCFA event in Boston. Mary Beth was the keynote speaker. She shared this story, her story, with an auditorium full of those afflicted, the runners, their families and friends. She will be missed
2010 Team Challenge Event Speech
Mary Beth Fecteau
Good Evening.
It is my enormous privilege to be able to stand in front of you tonight, as a participant in tomorrow's half marathon, as a mentor, and as a Team Challenge alumna. Wearing all of these hats and on behalf of Team New England, I proudly say "WELCOME TO BOSTON."
When I was told that I had the honor of being your speaker tonight, I thought a lot about what to share with you and to be honest, my biggest task was narrowing down everything I have in my heart and in my mind to a speech that ensures that you are able to go to bed tonight with enough time to get a good night's sleep before tomorrow's big day! So..here..we go.
The phrase "changed my life" is one that I feel is overused. That ham sandwich changed my life. That movie changed my life. That trip changed my life. However, I can say with no hesitation, my life was changed on August 30, 1985. I was 9. That was D-Day. Diagnosis Day. I would bet that many of you know the exact date of your D-Day as well. On that date, three weeks before my tenth birthday, I was diagnosed as having Crohn's Disease, after being ill and misdiagnosed for nearly a year. I was admitted immediately to Boston Children's Hospital, which was conveniently just across the street from my doctor's office. I was 9 years old and weighed 49 pounds.
I am not someone who ever likes to stand up and give my litany of medical dates, treatments, and procedures, and I will not be doing that tonight, for a couple reasons. First, we would still be here when the starting gun goes off tomorrow. Second, everyone in this room with these diseases has the same story, more or less. This is what binds us and makes us powerful as a group. I hope as you look around the room, you can feel that connection and that bond. Which brings me to the final reason. What I would like to say to you tonight, what is in my mind and heart, is not about tubes or pills or scalpels. It is about connection. It is about conversations. It is about meeting that person on the running trail and discovering that they too have a 10-year-old with Ulcerative Colitis. It is about the high five that you will get from someone wearing orange tomorrow morning on the course that you have never met, and will likely never see again. It is about a random introduction at the send-off training last year that turned into a lifelong support system. And it is about a conversation had while dangling weary legs in a pool post-race that turned into a wonderful friendship. This is the gift of Team Challenge. And this is one of the many gifts that Team Challenge and the CCFA have given to me.
I have had Crohn's Disease for 25 years this August. Last year, as a then 33-year-old who basically just "lived" with the disease, signing up for Team Challenge meant telling my story. And it meant telling it loudly. But here is the thing. Team Challenge, like IBD, is the great leveler. It is a place where you can run next to someone half or twice your age, someone who makes half or twice your salary, and someone who has had the disease for half or twice as long as you. It doesn't matter, because the minute you put on the orange, you are family. And everyone's story is welcome at the family table. However, during fundraising, I quickly learned that the key to being successful is putting your story out there. Because the only way we will find an end to these horrible, debilitating diseases is to reach out, talk about our experiences, and ask for help. And as we all know, this is not something that comes naturally for us. IBD is a package that comes, unrequested, and with a lifetime dose of private shame and pain. And we need to talk about it. I need to talk about the fact that I missed three-quarters of a party in the eighth grade because I spent it in the bathroom of an unfamiliar house and then had to explain my absence. I need to talk about the fact that while other people my age were learning their lines for plays and how to score goals, I was learning how to drop an NG tube by myself. I need to talk about the fact that eleven-year-olds can be cruel, and don't understand the need for and side effects of prednisone when they taunt and isolate. They only see 40 extra pounds, and a round moon face. And I need to talk about the fact that every day, every single day, I wake up and think, is this the day the other shoe drops? The day that everything shifts again? We need to put it out there. And for me, it meant putting the big "O word" out there. Because as this is my 25th year with Crohn's Disease, it is also my 15th year with an ostomy. Now, mind you, I am not embarrassed and I am not ashamed of any part of this, however, it is not something that I, that any of us, get up and shout from the rooftops. None of us are taking out billboards that we go to the bathroom 15 times a day. And I do not tell people I have an ostomy bag as soon as I tell them my name and shake their hand. However, to do the work, to raise the funds, to find a cure, we must tell our story. And tell it loudly and proudly. I need to talk about the fact that the night before my ostomy surgery, I stood in front of the mirror, without clothes, and thought "You will never look like this again." I was 19. So, I encourage you, I implore you...be loud...because we need to find an end.
I would like to take a moment to sing the praises of the CCFA. This is a group that has been there for so many of us, as they have been there for me, and for my family, since Day 1. Since D Day. This organization helps us to live day by day, to become connected, and to be hopeful. For a long time, I never allowed myself to think about, or say, the "C Word." We all know it and we think it, in those private moments, those moments where we think we cannot go any further. Since I signed my name on the line a year and a half ago to join Team Challenge, not only do I think and say the "C Word", I believe, wholeheartedly, that through our work, through the CCFA, and through each other, we will find a CURE and we will find it soon. In the meantime, we will run. We will walk. We will tell our stories. And we will continue to have the conversations. Experience the connection. We will help each other.
With all of that said, if you will allow me, I would like to take a moment to acknowledge a special group of people. My team. I spent my teenage years in doctors' waiting rooms and hospitals so I was never able to participate in sports, or theater, or other group activities. I never knew, never experienced, what it was like to be on a team. To be a part of a team. Until now. And because I am experiencing it later in life, and in this way, it means so much more. So, for the opportunity to experience this with you, Team New England, and for opening your hearts and telling me your stories, I thank you, with my whole heart. You have changed my life.
So, tomorrow I wish you all good luck and strength and I want to congratulate particularly those who are about to experience their first half marathon and their first Team Challenge race. Trust me, you will become addicted. But in these moments, take the time, have those conversations, raise your arms when you cross that finish line, dangle your legs in the pool, and savor this experience. You won't regret it.
